This is a post I have been meaning to write for a while, just had to find the time to do it properly. I wrote once before about choosing carefully what organizations you support, and at that time I mentioned Autism Speaks, as I had been hearing rumblings that not all was well in the realm of their influence.
Recently, this popped up in my awareness again because actors Emma Stone and Andrew Garfield have taken to trolling the paparazzi by holding up signs in front of their faces listing organizations that people should pay more attention to rather than Emma and Andrew. One of the organizations listed is Autism Speaks.
Now, they mean well, certainly, but they have probably not done a tremendous amount of research.
From The Caffeinated Autistic, “So what is the problem with Autism Speaks?” (which I am going to largely borrow from):
Autism Speaks is the most well-known autism charity. They have the most media coverage and are endorsed by many celebrities, but this certainly does not make them a good organization. [emphasis added]
Autism Speaks does not have a single autistic member on their board.
Autism Speaks only spends 3% of their budget on “family services”.
Much of Autism Speaks’ money goes toward research, and much of that research centers on finding a way to eliminate autism, and thus, autistics (which will likely be done through a prenatal test, in the same way that the Down’s Syndrome test is conducted).
Autism Speaks produces advertisements, small films, etc. about what a burden autistic people are to society.
Autism Speaks was responsible for “Autism Every Day”, which featured a member of their board talking about contemplating murder-suicide of her daughter in front of her daughter. This has now be removed from Autism Speaks’ Youtube channel.
Autism Speaks is responsible for the atrocity known as “I am Autism”, a short film produced by the Academy Award Winning Alfonso Cuaron, who also directed the 3rd Harry Potter movie (yes, really) and features an ominous voice saying things like “I am autism…I know where you live…I work faster than pediatric AIDS, cancer, and diabetes combined…I will make sure your marriage fails.”
In regards to the first point, Autism Speaks did have an Autistic member on their board at one point – the famous author, speaker and activist John Elder Robison, but Robison stepped down after Autism Speaks founder Suzanne Wright made some particularly controversial statements in 2013 about Autism being a disease that the world should be rid of.
Here’s what Robison had to say about the situation:
For the past four years I have worked very hard to defend Autism Speaks after a series of public relations missteps; beginning with the I Am Autism video. The most recent “Autism Speaks Point of View” http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action shows me that my words and efforts have had no real impact on the beliefs of the actual leadership of the organization.
This latest op-ed piece is simply not defensible for someone who feels as I do, and I cannot continue to stand up for the public actions of an organization that makes the same mistakes over and over again by failing to connect to the community it purports to represent.
Autism Speaks says it’s the advocacy group for people with autism and their families. It’s not, despite having had many chances to become that voice. Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.
The absence of people with autism in governing or oversight roles has crippled Autism Speaks in its efforts to connect with the community. Any group that hopes to be accepted in service to autistic people must make autistic people its #1 priority, with no exceptions. The priority cannot be autism parents, or autism grandparents. It’s got to be actual people with autism.
That’s about the most diplomatically it can probably be said.
Another one of the links from the Caffeinated Autistic post is a link to a criticism of an Autism Speaks produced video about use of AAC devices (Augmentative and Alternative Communication) to help Autistic people communicate. There is a really good takedown of this video (by Amy Sequenzia from Autism Women’s Network):
There are scenes of Autistics typing and it would have been great if the producers had focused on what they were typing, how it helps them and how to make it available to more people. After all, the title of the video is “I Want to Say.” As it has been their practice, Autism Speaks never allow Autistics to say what we “Want to Say.”
Instead, parents are the ones telling the story, their version of it. I would like to hear the Autistic voices, their experience from not being able to understand to being finally heard. It makes me sad that the ones who were supposed to be the stars of this video, and who obviously understand what is said about them, are watching this and hearing what is being said.
“Swallowed by his autism”
As if there was a non-autistic person before the autism “swallowed” him.
“Suffering with Autism”
Maybe they should have asked the Autistic himself if he suffers.
“He is very sweet for an autistic child”
Apparently that mother believes Autistics are, in general, monsters.
“I love who he is but I would give him a pill to cure autism so he can be happier”
If you love who he is, there is no “but”. Besides, this Autistic here is very happy.
“I want him to speak, I do”
Communication does not mean speech.
“Their entire existence is a battle”
I don’t battle autism. I battle misconception, silencing tactics and ableism.
Again, it serves to highlight the difference in focus. Autism Speaks is focusing on the negative, on only the problem, something is wrong and must be “fixed”.
One more article to highlight here, from Psychology Today “A Reporter’s Guide To The Autism Speaks Debacle”, which also does a pretty good job at presenting the facts, remaining mostly neutral (but leaning towards understanding and support over “curing”) and letting you decide for yourself.
Finally, more reference links (again thanks to the Caffeinated Autistic):
For further reading, here are a few more resources about/against Autism Speaks:
Say No to Autism Speaks
I’m Autistic, But Autism Speaks Doesn’t Speak for Me
An Autistic Speaks about Autism Speaks
A Chart Regarding Autism Speaks’ Allocation of Funds
ASAN’s flyer regarding Autism Speaks (this is easily printable and is good for distributing information quickly).
Joint Letter to the Sponsors of Autism Speaks
A Giant list of controversy links on WikiPedia
The post also lists several organizations that (as of the time it was written in March 2013) were known contributors to Autism Speaks, so if you want to do some Boycotting, have a look.
What about organizations that actually DO help?
The Autistic Self Advocacy Network is pretty much the best choice.
The Autism National Committee
Autism Network International
Autism Women’s Network
Autism is still very poorly understood, but it doesn’t help that the biggest, most well known (and well-funded) organization “advocating” for Autism is helping to stigmatize it and is alienating a lot of the people it purports to help.